Mix of good and bad

Dear Friends and family,

Lots of things worked out yesterday. Not only did we take the subway up to Fairway, have a nice breakfast in the café there, and shop (that is, Merwin got the items on the list while I read the Metro newspaper at a window table, but also we took a little side trip East on 72nd to stop at Tip-Top shoes to get another pair like the ones I was wearing so I could have one in the apartment and one in Glen Head. They are child-sized and fit comfortably. I guess if I could have predicted the rest of the day I would not have gotten two versions of this shoe--one in purple, no less. So back we went by subway to the apartment with our packages.

I think my days working in the library might be over. My computer is not acting right. I will have to ask Harvey if he has another, working, hand-me-own. It took me 3x as long to do anything as it should have because keys are not working. Finally I gave up. Anyway, it was time to go to Mt. Sinai for the 3 o'clock appointment. Snow was expected and we were eager, also, to get home, so we packed up to go directly to Penn Station after the hospital.

After and during a very thorough physical: EKG, blood work, and all the rest, we had a long talk with Dr. Mascarenhas, s charming young man. It would be too much to go into detail here, but the bottom line is that he will get me into one of his studies after asking the nurse who coordinates it about when that can happen. He as amazed that Merwin also has an MPD condition, ET, well under control with Hydrea, and we agreed to let Dr. M. study Merwin as well as me for the sake of his research. The condition is very rare anyway: 1 in 100,000 population, so 2 people, unrelated, in the same family is a further rarity. That's the good news. The bad news is that my condition, having reached the spent phase of bone marrow cell production, is not good at all. I may have weeks, months, or even years to live, but the likelihood is more for the lesser time. I don't intend to let this bad news prevent me from enjoying everything I can.

We dashed home on an express train to Port, where Dave picked us up; we were eager to fill the prescriptions Dr. M. had provided so I could start right away to try to reduce the WBC, which was over 160. We had the rest of the nice soup I had made the night before, and spoke to Harvey and Sandy about what had happened. Dr. M. agreed very readily to talk to Harvey by phone, day or evening, office or cell.

The day did end on good note: remember the stopped-up sink in the City bathroom. Ellen Sykes, our wonderful real estate agent and now friend urged us to demand that the management company fix the sink. Merwin wrote them a nice letter, and they agreed with his well-crafted argument: a fixer is scheduled to come to repair the sink this morning.

I don't think I mentioned one of the pleasures of the past few days: watching Emma, the new BBC production, on my 24" TV. I think on a snowy day like today, when work palls, it would be fun to see it all over again.

So work, food, friends and family--all the good things in my life will be uppermost in my mind today. A tearful person like me cannot help tearing up once in a while, but I am not going to ruin what's good by focusing on what's bad.

Writing to you, knowing you care, as so many of you have written to tell me, is a great comfort. Somehow, I know, even if you don't write, that you are all there for me.

Love to all,
Bernice